My wife has finally succumbed to this insidious disease, she was at home where she wanted to be surrounded by our family and very kindly looked after by the hospice ‘Care at Home’ team who were fantastic. She made the decision four years ago not to have a PEG or any feeding tubes fitted and her swallow finally gave out six weeks ago so the inevitable happened. For her it was a relatively peaceful decline for me it was a terrifying period of self recrimination and trying to do the best for her while trying to to obey her wishes. She said well over a year ago (took her ten minutes to say it but you will understand) that for her the worst part of PSP was not being able to talk, the physical symptoms with all the indignities associated with it was bad but for us, who have talked and discussed incessantly, not being able to was the worst.
Thank you to everybody on this site your support and your advice has been fantastic.
Thank you. Alan
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Birdman42
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I am so very sorry for the loss of your wife. Really sad for you and sending lots of love your way. It sounds liike you have done everything she wanted and it's all we can try to do. At least she at peace from this horrible illness again lots of love xx
so sorry for your loss, this is such an awful disease and she is now free to fly, free of all that, my mum prays every day for this , look after yourself and know she’s suffering no more , sending big hugs xx
Thinking of you and your family at this sad time. I hope in time you will find comfort in that you were able to support her in her wishes and she was able to die at home, in familiar surroundings with the people she loved best. Be kind to yourself now.x
My sincere condolences to you and your family in the loss of your wife. May only happier memories fill your heart in the days to come when you think of her. This journey is such a long, tough one for all. Hugs....
I'm so sorry Alan for the loss of your dear wife. As others have said, she will be free now of the suffering, though you must still be feeling the effects and mental exhaustion of all you endured together for years. My wife too has psp, probably had it for years before the eventual diagnosis, and like you I feel her losing the ability to communicate would be horrendous, so much so that we so far haven't dared even discuss this scenario, because she's so incredibly depressed it's hard to discuss fully the more difficult situations like swallowing, peg, loss of speech etc. She's now totally unable to stand or walk, so coping 24/7 with all the myriad of tasks is tiring, but I want to thank you for mentioning about the hospice help she had at home, I had forgotten this particular option was possible, dreading the eventual decision of when my wife may need hospice care, as I know she was scared of being in one despite many reassurances.My condolences, and big hugs, G
Dear G. Thank you for your kind words. Can I offer you some advice (make that an order) make contact with the hospice NOW. They are fantastic people that will not only look after your wife in the final phase but look after you both in the months and years before. Our hospice made me a better carer by advising on techniques and equipment and giving access to their day facilities. The hospice is a resource not a place to be dreaded. All the very best Alan
Thank you Alan, advice very much taken, I'll contact them today, I'm sure like you say, that they'll offer valuable advice, as up to now it's been very much a confused half hearted mish-mash advice from our overworked doctor and asleep social services etc. 👍🏼
I am so sorry about the loss of your wife. Thank you for the advice about hospice. I am worried about starting hospice to early. You have honored your wife during her psp journey. I hope I can do the same for my husband. All the best to you and your family.
Hi Runner333. Do not be frightened of the Hospice they are wonderful people who understand what you and your husband are going through. They will understand your reticence, they will not be pushy or invasive, just go and talk to them and see if anything they offer gels with you. It’s not doom and gloom there and you will meet some right characters amongst the outpatients. Alan
Dear Alan, I am so sorry to hear that your wife has passed away. May she rest in peace, finallly free from this evil disease.
You did everything you could for your wife, of course it was hard, of course you made mistakes, but what about all the things you got right???
We all die, it is the one guarantee of life. Your wife passed, in her own home, with ones she loved, around her as she wished, who could for anything more. Please take that tiny bit of comfort into the next part of your journey.
Sending you love and support. My husband died very peacefully in August in the wonderful local hospice, where he was in for his final night. I had nursed him at home with carer support intently for the last year and I was / and still am, physically and emotionally broken that last week of his life.
I thought I would find working through the grief process much easier than it is, having understood for some time the concept of anticipatory grief, but I’m still receiving emotional support from the hospice bereavement team for which I’m grateful. I still miss him terribly ( we were married for 53 years ) and am so sad that he lost the ability to speak a long time back. We were soulmates and had always talked and discussed together every day. This for me was the cruelest symptom of PSP as he maintained cognition virtually to the end.
Take good care of yourself now and just take life slowly, valuing those around you who love you and understand. WifeLilyRose. x
Please take solace from the fact that your beloved wife is now at peace and not fighting this awful disease.
You have done so much for her and whilst things may have gone wrong from time to time, you were there for her throughout giving her strength, so please take solace from this too.
The next few weeks/months are going to throw other challenges your way, so be kind to yourself and take it one day at a time.
I found I was totally physically and mentally exhausted when Chris died, nearly three years ago! This took a long time to work though and for it to go, admittedly not helped by going into Lockdown less than three months after his death. So please don't beat yourself up, take time and if you feel you need it don't be afraid to ask for help.
I hope you don’t mind me asking you how the grieving process is going for you. My husband of 53 years died of PSP in August with myself and our daughter by his side. Although we both understood about “ anticipatory grief,” I am finding how I feel now is more and more sad and I ‘m more weepy each week, missing him terribly. I’m lucky that my daughter with her husband and daughter, lives only 2 doors away and I have 3 very dear, supportive friends close by but I would really appreciate any guidance on how to move into my new life…..and laugh and smile again.
I do still feel physically exhausted which obviously doesn’t help.
August is still fairly recent in terms of grief. You are probably still getting over the physical and mental strains experienced after looking after your husband.
Whilst I agree we all probably suffered from anticipatory grief, the fact is that there is now a tremendous hole in our lives. It is difficult to know how we will cope with this.
I'm glad you are able to cry, something I found difficult to do and I am pleased to see that your family are close by. I'm sure they're a tremendous source of comfort to you. Do not feel guilty for crying, grief comes up and hits you when you least expect it.
The first year is always the most difficult, birthdays, anniversaries and of course Christmas and the New Year looming in less than two months. So just take it a day at a time, but if in time you feel you need some help, then talk to your GP about having some counselling. I recognised I wasn't coping over a year after Chris died and was pointed in the direction of a therapist who was a tremendous help. Covid lockdowns didn't help me as the pandemic was just beginning to gain momentum at the end of 2019.
I hope this helps, keep on keeping on, you'll get there, but life will never be quite the same.
So very sorry for your loss, I know that we were at similar stages as my Mum. The loss of speech has been very hard recently. I know that it will take some time to start the healing process but be proud of yourself for being by her side until the end, it's a very tough journey that not many outside of this forum will understand. Sending a big hug your way. Take care x
My sincere condolences to you for the loss of your dear wife. What a long and difficult journey you both have been on for many years. Her struggles are over and now she is resting in peace. It's time for you to take care of yourself now and to reflect on all of the joyous memories that you can think of. You stood by her and took care of her the very best you could. I'm sure she was very appreciative of that and it is something you have to be proud of. Your resilience and fortitude are admirable and it gives the rest of us caregivers strength and hope. Rest easy now and take it slow going forward to regain your strength. Please stay in touch through this site to let us know how you're doing.
A big hug - and make sure that you have family and friends close to you, not just now but during the months to come. My wife passed away 6 months ago under similar circumstances.
I am so sorry you are having to endure such pain in the loss of your wife, You have done so much for her and I hope in time the pain will lessen and you can recall happier times together. I too have PSP and I must confess further decline scares me.
I'm sorry. Re self recrimination, I feel that and I had/have the same, thought it's about going the feeding tube route and seeing my husband spend his final year unable to enjoy the comfort and community and pleasure of real food. And, yes, the inability to talk was by far the most brutal part about the end. My normally reticent guy was trying so hard to say so much and it was heartbreakingly impossible to understand. Sad face.
I am so sorry to hear about your wife's death. You have written about something so hard really eloquently. You are further down the road than me and I am hoping I will be half the man you have been when my time comes (and it is coming - communication is so hard now...)
You have done so well. Please have no recriminations.
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The story behind my daughters Marathon for PSP.
Update on how well my mum is doing since leaving hospital 7 weeks ago 😁
